Health Organization for Pudendal Education

Can anyone share a success story for PN that did not involve surgery? Reading most of you stories don't bring me hope at all. Surgery has a horrible success rate and I was told by Dr. Jordan that most people who go the surgery route damage themselves indefinitely. If anyone has any success stories NOT involving surgery I would appreciate it.

Jordan said he would like to do a nerve block with A2M. I am not sure what the point is though. Seems like a high risk low reward thing to me. Do nerve blocks even help or are the just a diagnosis tool?

Thanks!

I dont think that our situation is that doomed as it might seem...The treatment of PN is almost always multimodal and a lot of us had some improvment with PT, Neurontin, etc...regarding nerve blocks, e.g. dr. Antolak considers them partly curing, but I agree that their main purpose is diagnostic.

In the last 24 hours I have developed some very very light tingling in my legs and feet. It comes and goes. Could this be a result of the acupuncture or are my symptoms getting worse? I feel like when something is happening in my body now it's a reflection of my potential PN. I am paranoid and worried.

You can read konedog4 and KrisG's posts. They didn't have surgery.

I don't know anything about A2M and I'm not finding much about it online. Did Dr. Jordan give you some rationale for using it and can he point you to any studies that show it is effective?

Violet

What does it mean when your pain is strictly on one side 80% of the time?

My pain is one sided all of the time. I think it's musculoskeletal pain from lumbo-sacral issues and from walking on a lousy hip way too long.
Also have interstital cystitis.
I think it can get better even though I I am truly discouraged now.
Last year I had a reprieve from the more constant pain and was able to do a lot more than this year.

So I am hearing a lot of negative things about nerve blocks on this website. Are they really just a diagnostic tool because Dr. Jordan said they end up being a cure for a lot of his patients. Also, I was told that nerve blocks will stop this from getting worse. I was also informed that the majority of people who are bed ridden are a very small number who received poor treatment on the front end of this disease (PN/PNE). Should I assume there are more success stories out there than agonizing stories? If nerve blocks and PT don't work than what the heck does? Because research shows surgery has an extremely low success rate.

Violet here the link to A2M :
http://neurologywestla.com/procedures/r ... oglobulin/

It amazes me that doc tell people that a nerve block will cure anything. Even for straight forward back issues its not true. It is only temporary at best. And how does a nerve block stop PN from getting worse? Makes no sense to me. In my opinion for what it's worth nothing works but medications and tincture of time. This past week was year 3 going on now 4 for me.....with no chance of cycling again with my friends again this summer.

Patty thank you for the response. How bad are your symptoms? I am still able to exercise, work, do just about anything really. I don't care about bike riding anymore as that's what go me here in the first place. Jordan said the Nerves Blocks can treat/cure a patient with PN but it's not a fact. Everyone is different. Can you please share your suggestions of treating this? Do you believe time will heal it? Seems like it would be a little ironic if your symptoms did go away you started bike riding again and then they came back! Are you really going to bike ride again when your pain free?